Seeking Comfort for my Sissy

Seeking Comfort for my Sissy

Hi, My name is Lene'. My Sister-in-law has been diagnosed with "APS" and has been hospitalized since April 17th. She has other complications as well but the APS seems to be a spot-on diagnosis because of her symptoms. She also suffers from PKD (polysistic kidney disease) and must undergo dialysis atleast 3 (sometimes 5) times weekly to survive. Not sure which came first...the PKD or APS/Hughes. She does not have access to the internet. I found this site while trying to learn more about her condition and have been printing off many of the blogs that all of you have been posting. Your postings have given her great comfort and I want to thank you for that. There are a few questions I want to ask all of you:

Do any of you have eye problems?

Any of you have issues with not being able to walk?

Any open sores that just will not heal?

Looking forward to getting your answers and sharing them with "Sissy"

Keep up the good fight,


8 Replies

  • Sorry to hear dissuaded is having a hard time I have occluded a kidney because of hughes and may need dialysis in the future I also have problem walking as I have had really bad circulatory problems in my legs and my hips and leg muscles are stiff.

  • Thank you for replying. It is very interesting to find others with APS who suffer the same symptoms. My Sis now has cellulitis, which is causing her great pain, they finally started her on morofine for this. She also was just diagnosed yesterday with sepsis. This will be her second major infection. Not sure whether to blame the APS or the environment of the hospital.

  • Hi lene'

    I'm glad you found us, welcome to this site. Is great that you looking for help and info for your sis in law.

    I have trouble with eyes, get dry, vision blurs, double vision and eyesight not as good as it was.

    I have problems with walking at times cos legs weak, painful and swelling in feet.

    I too have sores that just take ages to heal.

    Also suffered with uti's through childhood and teens, had nephritus and pylonephritus (spelling ooops!!) during pregnancy.

    So sorry your sis in law goung through all this, thinking of her and yourself. Is not often that us hughies have such support, good on you.

    Take care gentle hugs love and all the best to you both Jessielou xxxx:-) :-) :-) :-) xxx

    Ps any more questions ask away x x x

  • Thank you for sharing. I have been on vacation this past week and plan to see my Sis this weekend. I will print off all of these responses for her to read and I am sure she will have more questions, thank you for leaving that door open. Gentle hugs to you as well. Lene'

  • Hi Lene,

    Sorry took so long to reply, I hope Sis is ok, I`m sorry she`s got go through so much. She sounds like a real fighter, and I`m glad she`s got you in her corner!!, Glad they given her some pain relief at last.

    Take care, gentle hugs to you and your sis, love Sheena, xxx Jessielou xxxxxxx :-) :-) :-)

  • Hi Lene,

    I am happy you are supporting your Sis in law it is so nice to hear when family are supporting their family when in trouble. Please ask any questions you like no question is ever to small and if nobody knows the answer they still will know someone who may know how to help and we all in the same boat wheathner it be a Hughes person or there support network we all need help and support at times.

    Sorry off on a tangent there regarding your questions

    Do any of you have eye problems?

    I have always have issues with my eyes (where glassess all the time) but for some strange reason i get dry eyes and keep getting stigma they are not sure if it was due to the stroke or the APS symptoms.

    Any of you have issues with not being able to walk?

    Since 97 i have been using a wheelchair this was due to the damage done to me by a stroke and i have a lot of muscle wastage on the legs now. I alsoi suffer with my legs swelling and and circlutory problems(legs go cold and purple or red hot and look like sun burn) and my right foot is hypersensative and extremly painful to touch

    Any open sores that just will not heal?

    I find if i get any type of sore or cut it takes ages to heal and now on waferin it takes longer

    Hope this helps


  • Thank you for taking the time to answer. I find all of you to be so sweet, caring, refreshing and supportive. Sis is having a rough way to go the past week or so. She has a painful case of cellulitis and just was diagnosedd with sepsis yesterday. She deals with so much but still goes to dialysis and physical therapy...she is a tough gal!

  • Hi lene

    hope sis in law and yourself well today. Thinking of you both.

    Take care, gentle hugs, love jessielou ( sheena ) xxxxxxxxx :-) :-) :-)

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